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“People are different. And it is the best way.” Return to Soapstone Creek: thinking about your family health history My December holiday hiatus extended through January after I received word last fall that I had been awarded a second writer’s residency at Soapstone, a retreat in Coast Mountains. Many would not understand why I consider it paradise to spend two weeks out in the woods in subfreezing weather with only a woodstove for heat and the only other person, a housemate who was a complete stranger before arriving here (she’s great!). No TV, no cell phone, no hairdryer. Fifteen miles to the nearest latte. It’s heaven, for the clarity of thought you get when you actually have time to commune with yourself. But I am thinking of my friends and readers in the autism community too. Part of the work I was doing at Soapstone involves research on inherited disorders.
Meanwhile over at Thomas Edison High School, Bryce is writing a paper for his health class. The paper is about autism. Specific questions must be answered. The first question is: what is the cause? Because it’s a short paper, Bryce gives a short answer: we really don’t know what causes autism. There are many different ways to have autism, and the cause may be many different things. Bryce is right – we don’t have a definitive, across-the-board answer. We each form our opinions according to what information makes sense to us, each in our own situation. But until we know a lot more than we know now, what makes sense is to pursue all logical possibilities. One of the avenues worth pursuing is that hereditary link, so painfully demonstrated in my family with Huntington’s disease. This is where my devotion to the field of autism and my equally potent love of family history and genealogical sleuthing join forces. If you’ve never mapped the health history of your family, you can’t know what clues might be just waiting to be revealed. Many illnesses and disorders run in families, and discovering these patterns can profoundly influence the course of research, identification of risk factors, preventative measures and treatments. The Surgeon General’s Office of the US Department of Health and Human Services has developed a tool to help you track, organize and share with your health providers this important information. My Family Health Portrait is an Internet program compatible with any current web browser, and is available in English and Spanish. The tool is free and downloadable to your own computer. I used My Family Heath Portrait to set up my own family health information so I could see how the program works. It’s super-easy to use and sets up good visuals, both in spreadsheet form and in family-tree style chart form. Seeing this kind of information presented visually is very powerful. I had thought I knew most everything about my immediate family’s health, but the chart revealed a startling number of red flags where I had indicated “I don’t know.
Visit the My Family Health Portrait website
On My Soapbox: “Goodbye to a bad law” I have often used this Soapbox to decry standardized educational testing, and I will probably continue as long as I have breath. I am beyond thrilled when someone comes along who not only agrees with me but says it better than I ever could. Such a person is Jeff Miller, president of the Portland (Oregon) Association of Teachers. His recent editorial, “Goodbye to a bad law, hello to opportunity” is the clearest indictment of No Child Left Behind that I’ve ever read, but it goes beyond to offer better focus and direction for what future laws might look like. No Child Left Behind, writes Mr. Miller, “presumes to measure the performance of schools by relying on numbers that reflect only a few legitimate goals. But schools have many goals: basic math and reading skills, to be sure, but also critical thinking, citizenship, arts appreciation, physical and emotional health habits, self-discipline, responsibility and conflict resolution. To threaten schools with sanctions for failure to meet only one goal inevitably diverts attention from others. “The mandate...that all students must be proficient at challenging levels is ludicrous. Even if we could eliminate all socioeconomic disadvantages, simple human variability would prevent a single standard from challenging every student. “No Child Left Behind denies the importance of all social policy except school reform. It insists that school improvements alone can achieve universal proficiency. But inadequate schools are only one reason children perform poorly.” Many socieconomic factors are at work: children with health problems, children living under the stress of neighborhood crime, children who are moved from school to school for economic or academic reasons. “The list,” says Mr. Miller, “could go on.” It is, Mr. Miller states, “a fantasy that teachers can wipe out socioeconomic differences among children simply by trying harder.” Ellen here: the same fantasy applies to the segment of learners like our kids who may be fully capable of achieving, but may need a different instructive approach and a different timetable. Mr. Miller predicts the demise of No Child Left Behind this year, and hails 2009 as “a unique opportunity to begin anew in educational policy.” Now is the time for all of us with so critical a stake in so critical an issue to not only be listening to this year’s slate of local and national candidates, but pressing them for solutions that are workable, enforceable and full funded. The Autism Society of America plans to “put autism on the platform for the 2008 US Presidential and Congressional campaigns, starting with our Vote 4 Autism Today Initiative.” Download a PDF copy of ASA’s Questions for the Candidates. Click here to read the full text of Jeff Miller’s “Goodbye to a bad law, hello to opportunity.”If you are in the Pittsburgh, Pennsylvania area, we’ll have two opportunities to meet in March. On March 13, I’ll be keynoting P.E.P. Rally: Parents, Educators, and Providers working together to provide the best services for students with autism. The conference is sponsored by California University of Pennsylvania at Coal Center and Intermediate Unit One. Afternoon breakouts include sessions on transition, assistive technology, visual strategies, play therapy, language acquisition, early detection and more. I will also be available for round-table Q&A sessions in the afternoon. More information can be found here. On March 14, I’ll be speaking at the autism conference of the Pennsylvania Cyber Charter School in Midland. More information available soon, or contact the school directly.
Excerpt: “You ain’t fair.” It’s a memorable moment in To Kill a Mockingbird when Scout throws this accusation at her uncle. He’s just walloped her for flinging forbidden foul language at a peer. “You never stopped to gimme a chance to tell you my side of it,” she berates him. We can all agree that Scout’s perception of her uncle’s unfairness is a far cry from your children whining about who got two extra French fries or three minutes more at the computer. But explaining the amorphous, intangible concept of “fair” to our black-and-white, all-or-nothing, concrete-thinking children with ASD can be equally frustrating for both you and your child... Autism Asperger’s Digest *** Look Out College, Here I Come... Or Not “The path from high school graduation often leads to a four-year college, but not all students are ready or willing.” The Village Family, Fargo/Moorhead, February-March 2008 Excerpt: On the last day of May two years ago, my son was one of several hundred students in dark green caps and gowns who walked across a stage, accepted a high school diploma and continued out the door into the wild blue yonder of rest of their lives. According to the school newspaper, somewhere between 50% - 60% of them were headed to a four-year college. The rest were not. My son was one of them. The four-year college education is one version of the American Dream, but it isn’t for everyone. .. with the cost of a four-year university frequently exceeding $100,000 (tuition, books, housing and food, transportation), it may pay to take a close look at whether your child is truly ready for the experience. Here are some areas to consider... ***
Excerpt: “When Jamie was first diagnosed with autism, I read everything I could get my hands on.” I hear this phrase almost as often as I hear “Good morning.” It invariably comes from loving, devoted parents determined to do whatever is necessary to help their child with autism. They are irresistible forces planting their feet in front of the immovable object. They bravely confront the slenderness of the passage between the rock and the hard place. No matter how Big and Bad the Wolf, he is not gonna blow their house down. But after reading everything they can get their hands on, they often feel far from enlightened or educated. They are exhausted, confused, frustrated, bewildered – and paralyzed by information overload... *** The Great Indoors: Classrooms that Inspire Learning Excerpt: As parents of children with learning differences, one of the first things we learn is how little we actually know about learning. The typical classroom is too frequently a place of frustration, anxiety and other unseen obstacles to learning. Our family was beyond fortunate that, shortly after our son was identified with autism, we fell in with an occupational therapist who was on an odyssey of her own – discovering a fascinating new set of tricks that refocused the manner in which she approached classroom education, with remarkable results... Meet my readers: People in your neighborhood Following are some groups and organizations who have contacted me recently. These groups are all actively involved in supporting families living with autism. I hope some of you can hook up with these People in Your Neighborhood: PENNSYLVANIA FOSTER PARENTS ASSOCIATION The Pennsylvania State Foster Parent Association advocates for all those who care about children and their families. We work supportively with foster, adoptive, and kinship families, and with local foster parent associations and agencies who care for the children we serve. ROCKFORD, ILLINOIS Our mission is to provide information, resources and support for families and communities affected by autism spectrum disorders. MAPLE RIDGE, BRITISH COLUMBIA Visit the Early Childhood Development Committee Website at www.ridgemeadowsecd.ca AUSTRALIA AND NEW ZEALAND We are an integrative health & lifestyle magazine distributed for free around Australia and New Zealand. BAY CITY, MICHIGAN Regional Collaborative START (Statewide Autism Resources and Training) is involved with five other ISDs: Huron, Midland, Tuscola, Sanilac, and Gratiot-Isabella. Newsletter, In Step with Autism, is distributed to families and staff of individuals with ASD in all six Intermediate Districts. Contact Karen Gutierrez at gutierrezk@baisd.net NEW WESTMINSTER, BRITISH COLUMBIA The Family Support Institute is a province-wide organization whose purpose is to strengthen and support families faced with the extraordinary circumstances that come with having a family member who has a disability. We believe that families are the best resource available to support one another. Directed by families, the Family Support Institute provides information, training and province-wide networking to assist families and their communities to build upon and share their strengths. DETROIT/WAYNE COUNTY, MICHIGAN ConsumerLink is contracted under the Detroit-Wayne County Community Mental Health Agency to coordinate/manage services and supports for approximately 2200 persons with developmental disabilities, including community outreach and education to the local school districts. We provide a full continuum of services through a flexible network of providers as directed by a person’s individual plan of care. Supports include Person-Centered-Planning, Self-Determination, Supports Coordination, Supportive Employment, Community Inclusion/Integration Services, Respite, Home Staffing, Psychiatric Care, Inpatient Hospitalizations, Individual and Group Therapy, Crisis Screening ,Supported Independent Housing and Residential Care. ConsumerLink Network UTAH If you live in Utah and have a child or a family member with a disability, Utah Family Voices website welcomes you. Utah Family Voices is all about supporting families of the disabled and is run by parents of special needs children. We offer advice and support from parents who have found ways to work through red-tape issues like funding, SSI disability paperwork, health insurance questions and accessibilityQuick stuff, updates, tidbits: The article-length version of Ten Things Every Child with Autism Wishes You Knew is now available in Spanish, thanks to Angela Couret, director of Fundación Paso a Paso in Caracas, Venezuela (http://www.pasoapaso.com.ve). Contact me to receive it in Word format. Bill Stillman’s article Presuming Intellect, which appeared in my April 2007 newsletter, is now available in Spanish. Contact Bill at Billstillman2@aol.com. Bill also has a new book. The Autism Answer Book encompasses over 300 questions (and "inside-out" answers) from real parents. Info at www.williamstillman.com. Autism Podcast with Michael Boll recently featured Steve and Shannon Johnson. Shannon is the creator of the Foggyrock.com online social community for autism families featured in the Meet My Readers section of my October 2007 newsletter. Hear the interview at http://www.autismpodcast.org/show_notes/50-75/62_foggy_rock.htm . (My 2007 interview with Michael is at http://www.autismpodcast.org/show_notes/46_ellen_notbohm.html) And in the category of “what is possible:” I’ve just come from Thomas Edison High School, where the members of Bryce’s Toastmasters class (an Edison requirement) gave presentations to a gathering of the whole student body plus parents. Bryce’s speech detailed how he got the “Harry Potter” scar he carries on his forehead. I knew he was going to give this prepared speech, but I didn’t know the kids would also be given an impromptu topic and be expected to speak on it – in front of that audience of 100+! Bryce handled it like a pro. He was asked to tell about his favorite hobby, and gave an eloquent summary of why he loves being on the track team (“in the beginning, my mom forced me to try it, and I’m glad she did”). And this, from a child who at three years old was still speaking in one-word sentences. It’s what I love best about Bryce – he is a walking illustration of what is possible.Newsletter archive now on my website You ask, I deliver. Back issues of my newsletter are now archived on my website If you are new to our newsletter community, please visit the archive and browse some popular past features: November 2007: The War on Soda, My Navy Blue Hawaii October 2007: “Behavior?” We are what we eat September 2007: Back to school: an OT’s warm-up for classroom work July 2007: Meet Chris Fossel, Merrill Lynch Disability Awareness Professional Network May-June 2007: On my soapbox: Life in the No Put-Down Zone April 2007:Presuming Intellect: Ten Ways to Enrich Our Relationships Through a Belief in Competence by William Stillman Feb-March 2007: Positively Autism: e-zine highlights “the sunny side of the spectrum” January 2007: New research: “Test” is a four-letter word
Ten Things Your Student with Autism Wishes You Knew 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders The Autism Trail Guide: Read the Preface, here. Read the first chapter,You Know More Than You Think You Know, here. If you’ve read my books and feel inclined to share your thoughts with others, please consider posting a review on my book pages at www.amazon.com. It’s easy to do and you don’t have to post your real name. Please forward this newsletter to anyone you feel might share an interest in our kids with autism. New subscribers can sign up at my website. If your spam-blocking software is particularly aggressive , you may want to add our email address <emailme@ellennotbohm.com> to your “white list” of senders. We take your privacy very seriously, and do not share our mailing list addresses or information with any other entity or business. ©2007 Ellen Notbohm | Third Variation Strategies, LLC |
Newsletter for February 2008
I’m at work on an historical novel, and one of my more heart-rending discoveries is a branch of the family decimated by Huntington’s disease, a horrid affliction that close to 100% inherited. Huntington’s often eventually robs its victims of motor control and speech, and can lead to frightful psychosis. I cannot describe to you how deeply I feel, across more than half a century of time, this family’s panic and despair, watching one family member after another fall victim to a villainous illness at a time when treatments were minimal.
All’s Fair
So Many Books, So Little Time